{
  "abstract": "Introduction A key challenge in pulmonary arterial hypertension (PAH) research is assessing the specific impact of this condition on health-related quality of life (HRQoL), also considering the patient’s subjective experience and caregiving burden. The prospective, observational, multicentre Non-INterventional Study on Pulmonary arterial hypertension patients treated with macitentan and/or selexipag: ExperienCe from an ITalIan cOhort (INSPECTIO) study integrated narratives with patient-reported outcomes (PROs) and clinical data to gain deeper insight into patients’ experiences of PAH, also involving caregivers’ perspectives.Methods The study was conducted across 29 Italian hospital-based centres and enrolled adult patients with PAH already on treatment with macitentan and/or selexipag as part of combination therapy. A dedicated narrative collection was carried out within the larger study. Patient and caregiver narratives were collected at enrolment (visit 1; V1) and at 12 months (visit 3; V3), then analysed through MAXQDA software and correlated with emPHasis-10 questionnaire scores and clinical data.Results Out of the 186 patients enrolled in the overall INSPECTIO study, 96/186 (52%) completed the narrative at V1 and 58/186 (31%) at V3; 29/54 (54%) caregivers completed the narrative at V1 and 16/54 (30%) at V3. The analysis revealed an alignment between patient narratives and emPHasis-10 scores. Specifically, at V3, emPHasis-10 scores were higher for patients who did not mention their domestic life in narratives, reported feelings of shame or isolation, limitations or breathlessness also in daily activities and reported ongoing treatment-related issues. Nonetheless, at V3, 36/58 (62%) of patients described living with PAH as manageable. The care pathway showed a positive impact on caregivers: their narratives indicated a shift from V1 to V3, with improved perceptions of the care relationship and PAH therapies.Conclusion INSPECTIO is the first study to integrate narratives, PROs and clinical data in PAH research. Findings suggested that appropriate support and therapeutic management are crucial to help patients cope with the condition. Narratives have proven to be a valuable tool for understanding the impact of PAH and improving its management, providing insights that can inform a more patient-centred approach.Trial registration number NCT04567602.",
  "authors": [
    {
      "affiliations": [
        "Department of Cardiology, Foundation IRCCS Polyclinic San Matteo, Pavia, Italy"
      ],
      "name": "Laura Scelsi"
    },
    {
      "affiliations": [
        "Polyclinic Umberto I, Pulmonary Hypertension Center, Department of Cardiovascular Respiratory Sciences, University of Rome La Sapienza, Rome, Italy"
      ],
      "name": "Roberto Badagliacca"
    },
    {
      "affiliations": [
        "IRCCS Ca Granda Foundation—Milan Polyclinic Maggiore Hospital, Dyspnea Laboratory Department of Clinical and Community Sciences, University of Milan, Milan, Italy"
      ],
      "name": "Marco Vicenzi"
    },
    {
      "affiliations": [
        "Hospital Santa Maria della Misericordia, Rheumatology Unit, University of Udine, Udine, Italy"
      ],
      "name": "Emma Di Poi"
    },
    {
      "affiliations": [
        "Department of Cardiovascular and Thoracic Sciences, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy"
      ],
      "name": "Fabiana Baldi"
    },
    {
      "affiliations": [
        "IRCCS Ospedale Policlinico San Martino, Genoa, Italy",
        "Department of Internal Medicine and Medical Specialties (D.I.M.I.), University of Genoa, Genoa, Italy"
      ],
      "name": "Pietro Ameri"
    },
    {
      "affiliations": [
        "Pneumology Department “G. Monasterio” Foundation, National Research Council Pisa Research Area, Pisa, Italy"
      ],
      "name": "Edoardo Airò"
    },
    {
      "affiliations": [
        "Cardiology Department, Ospedale di Venere—Carbonara di Bari, Bari, Italy"
      ],
      "name": "Francesca Bux"
    },
    {
      "affiliations": [
        "Unit of Immunology, Rheumatology, Allergy and Rare Diseases, Vita-Salute San Raffaele University, Milano, Italy"
      ],
      "name": "Dagna Lorenzo"
    },
    {
      "affiliations": [
        "Cardiology, Haemodynamic and Cardiac Intensive care Unit, San Salvatore Hospital, L’Aquila, Italy"
      ],
      "name": "Livio Giuliani"
    },
    {
      "affiliations": [
        "Cardiology and Cardiac Intensive Care Unit, Ospedali Riuniti Ancona Umberto I-G.M. Lancisi-G. Salesi, Ancona, Italy"
      ],
      "name": "Gian Piero Perna"
    },
    {
      "affiliations": [
        "Cardiology Department, Ospedale Generale Regionale di Bolzano, Bolzano, Italy"
      ],
      "name": "Edoardo Bonsante"
    },
    {
      "affiliations": [
        "Cardiology Department, University Hospital Polyclinic of Bari, Bari, Italy"
      ],
      "name": "Carlo D’Agostino"
    },
    {
      "affiliations": [
        "Cardiovascular and Thoracic Department, University Hospital City of Science and Health Turin Cardiology U, Turin, Italy"
      ],
      "name": "Claudia Raineri"
    },
    {
      "affiliations": [
        "Heart Failure, Clinical and Rehabilitative Cardiology Unit, Centro Cardiologico Monzino, IRCSS, Milan, Italy",
        "Department of Clinical Sciences and Community Health, Cardiovascular Section, University of Milan, Milan, Italy"
      ],
      "name": "Piergiuseppe Agostoni"
    },
    {
      "affiliations": [
        "Healthcare Area, ISTUD Srl, Milan, Italy"
      ],
      "name": "Antonietta Cappuccio"
    },
    {
      "affiliations": [
        "Healthcare Area, ISTUD Srl, Milan, Italy"
      ],
      "name": "Erika Greco"
    },
    {
      "affiliations": [
        "Healthcare Area, ISTUD Srl, Milan, Italy"
      ],
      "name": "Maria Giulia Marini"
    },
    {
      "affiliations": [
        "Medical Affairs Department, Johnson & Johnson, Milan, Italy"
      ],
      "name": "Matteo Biancospino"
    },
    {
      "affiliations": [
        "Medical Affairs Department, Johnson & Johnson, Milan, Italy"
      ],
      "name": "Alessia Uglietti"
    },
    {
      "affiliations": [
        "Medical Affairs Department, Johnson & Johnson, Milan, Italy"
      ],
      "name": "Stefano De Santis"
    }
  ],
  "title": "Understanding the burden of pulmonary arterial hypertension among patients and caregivers through narrative medicine: data from Italian multicentre observational INSPECTIO study",
  "uid": "b1918607-f941-58c5-b32f-9b2d42902dc1"
}